Caring for a Loved One with Dementia this Summer?¿Cuidando a un ser querido con demencia este verano?

Caring for a Loved One with Dementia this Summer?

According to the CDC, Alzheimer’s disease—a type of dementia—affects an estimated 5.4 million Americans. In 2014, 15 percent of the U.S. population (or 46 million adults) were 65 or older, and the number is expected to climb to about 22 percent of the population (88 million U.S. adults), by 2050.

Anyone who has a relationship with someone suffering from Dementia or Alzheimer’s knows that even the simplest rituals in daily life can become true challenges—for both caregivers and the family members themselves—as the disease progresses. Something as innocent as making and enjoying a morning cup of coffee or tea can turn into an exhausting and frustrating experience.

I work closely with elderly New Yorkers who suffer from dementia to ensure that they are able to live safely and independently in their own homes. In many instances, this also means educating family caregivers about how to cope when situations become stressful.

My colleagues and I know there are countless potential obstacles that can make even daily rituals extremely difficult. We hope the following guidelines will help family caregivers find patience and a sense of calm while caring for a loved one with dementia.

Familiarity can help lessen frustration.

Accentuate the familiar: You may need to remind your family member with dementia who you are, or of another person, place or daily ritual. Say “I’m…, I visit you here at home every day” or “Hi Grandpa, it’s me… I’m off from school and am going to be spending this morning with you.” This helps a them feel grounded in what they know and allows them to feel safe with that knowledge for however long they can. Patience is a virtue here, it’s important to manage your own expectations and try not to take your loved one’s memory loss personally.

Observation is key: As noted above, familiarity can help lessen frustration sometimes, when your loved one can grasp onto something familiar or expected. Notice favorite foods, drinks, how they take their coffee—reminding someone with dementia of the things they enjoy can be calming and helpful. Take note as well about times of day that they might seem to be more clear or confused, and adjust your caretaking accordingly. For example, many patients may be disoriented in the morning, others may also experience sundowing‎ and become very confused in the evening and nighttime, and even try to leave the home.

Engage your loved one.

As these conditions progress, your loved one may even forget how to walk, move, or swallow. In extreme cases, the person you’re caring for may need reminders about putting one foot in front of the other when ambulating. Preventing aspiration is imperative as well when dementia is advanced, it is important to carefully observe your loved one as they are eating and drinking. You may want to consider bringing in home care assistance to help with these more challenging times.

Many patients may be disoriented at specific times.

Try new conversation tactics: Since conversations can be repetitive and tend to loop around to the same topic or questions, try to listen carefully and then reword the question or emphasize a different point to help keep communication flowing. Re-clarifying and altering the question slightly can go a long way. Also, though it is tempting when conversing with someone with dementia to fill every silence, sometimes you do have to give the person some time to think before they respond.

Involve the patient: Instead of calling all of the shots with simple tasks like getting dressed and ready for the day, involving your loved one or client can help foster independence and self-respect. You can make suggestions—“It’s hot outside today, so let’s wear something with short sleeves”—but let them choose which short-sleeve shirt. Try this when going grocery shopping too: ask which flavor or which brand of a product they think you should buy.

Encouraging input in small decisions may allow your loved one to feel some of the independence that often seems sadly missing. And try to keep your loved one active by playing Bingo, cards, reading with them (even if you have to decrease the reading age), or coloring and practicing with puzzle or word books. Observing surroundings outdoors and in the neighborhood can stimulate mental activity. You might also try doing exercises together or even dancing.

Know when to take a break.

Be mindful of your reactions: Even if your loved one is suffering from a very severe form of dementia, he or she will still react to you based on your tone of voice and/or facial expression. Be mindful of not letting your frustration show. It is difficult, but take a deep breath, put a smile on, and keep your tone positive. It can make a world of difference.

Know when to take a break: Sometimes there is nothing left to do but simply step away for a short while. This is one of the most important things you can do to take care of yourself as a caregiver. If things have become aggressive or simply too overwhelming, walk away for a few minutes (as long as it is safe). Give yourself some time to collect yourself and try to return with a different facial expression.

Remember safety: To keep your loved one safe, make sure to check window locks, stove knobs, and unplug appliances such as the microwave to prevent accidents, burns or food safety issues. Door alarms can be very helpful when someone has a tendency to wander off, and you may want to consider getting a Safe Return Bracelet from the Alzheimer’s Association. Registering a loved one with advanced Alzheimer’s or dementia is very important.

Alicia Schwartz is a Registered Nurse. For more information about VNSNY CHOICE Health Plans from the not-for-profit Visiting Nurse Service of New York, please call 888-867-6555 or visit www.VNSNYCHOICE.org.